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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, October 11, 2006

 

A Human Rights Crisis

After The National Post article, I have mixed emotions.

Adam brings me great joy. Adam is autistic and that it's okay TO BE AUTISTIC. Autism is entwined with many abilities as well as challenges. I am resolute that we MUST as a society begin to pay equal respect to autistic people who do not see their lives as a tragedy, or that THEY are not like US, as such, inflicted with a disease. Indeed, this idea is imposed upon autistic people by non-autistic people, and continues to marginalize and stigmatize the many autistic children AND adults living in Canada today. I am resolute that I have a responsibility to defend my son's right to accurate science about autism and that he not be assumed or deemed a "burden on society." If we said that about our blind and deaf communities, that would be discriminatory. Yet, it is sanctioned in autism. I am resolute that we must continue our arduous work at the level of human rights and science, to understand autism in the face of such pejorative use of language and interpretation of autism and its respective "behaviours," viewed from an abstract notion of what "normal" may or may not be.

I read the first lines of the article: "Four year old Adam Wolfond is comforted by shadows. Jumping on his backyard trampoline, with his arms at his side and his face turned to the sun, he wiggles his hands furiously so that, in the lower periphery of his vision, he sees the sunlight flicker through his tiny fingers...his shadow play is properly [bold mine] called self-stimulatory behaviour [bold mine], like his habit of spinning around and around and strangely never losing his balance."

I was immediately struck by this interpretation of autistic behaviour. Again, looking at him from a non-autistic perspective, and without knowledge of what autism is, or asking the question of what that behaviour means for an autistic person (the article did not interview many autistic adults in the room at Lonsdale Gallery last Thursday night), there was a language use that lacks a fundamental rigorous and respectful investigation of the autistic perspective. This lack spotlights a false-belief that autistics don't understand themselves or their own behaviour, or are even aware of it, or that they understand how they are viewed by non-autistics. Indeed, if you speak to any autistic invidividual (even the "low-functioning" one who may use a computer to communicate), one begins to garner an appreciation for the line formation of ice on the ground that may twinkle in the sunlight. The behaviour of the autistic person entranced by such a vision, may to us non-autistics who may not appreciate the intricacies of such grand designs, be interpreted as "weird" or "abnormal." Indeed, many an assessor, who viewed my son at the time of diagnosis, often wears these prejudiced glasses -- the outsider "interpreting" behaviour that s/he does not understand -- and hardly does the work TO UNDERSTAND. As a result, you will get such a skewed, unempathetic, unknoweledgable, nay biased, interpretation of what autism is for the non-autistic person, thus, a comparison between what is and isn't "normal."

And then of course, Dr. Wendy Robert's, confusing "conclusion" that while she feels autism is "on the continuum of normal," she "would [still] be injecting." And of course the notorious comment used by most genetic researchers to justify prenatal testing for autism: "many parents have been beaten black and blue by their autistic children," as if the diseased, sick, [their implication, not mine] child is at fault for this and ALL AUTISM MUST BE ERADICATED -- strikingly reminiscent of a FINAL SOLUTION. It sounds like other genetics researchers, whose funding depends on such flagrant statements, and like Dr. Jospeh Buxbaum, whose parental supporters "will never be an Albert Einstein." I've stated many times in past posts, that the most frightening thing for me is the rash and quick conclusion that a cure for autism is required, without understanding autism in the least or for any consideration of the ethics involved with regards to implication and consequence. No consideration is paid to the damage this may be doing to autistic people, living and thriving in our communities today. Michelle Dawson said correctly in her CBC Quriks and Quarks interview: "even if it helps one person, it may do an equal or greater amount of harm." Does ANYONE consider the harm such talk inflicts upon the autistic person??

It's time to say ENOUGH IS ENOUGH.

While my Adam may never be an Albert Einstein, I refuse to impose an assumption that he is incapable of being one, or at least, the best ADAM he can be. To believe that our children are incapable to fulfill their potential as autistic people, is to believe that Stephen Hawking is not possible. I refuse to state that just because he is autistic, he is an incapable vegetable. Simply, it is just not the case. It strikes me as sensationalist of these scientists to continuously use such depreciative examples of situations or children -- whose circumstances may be so complex -- to just write it all off as the predicament of ALL AUTISM, for the purposes of aggrandizing their research. As we still do not understand what autism is, it strikes me as horrific for a researcher to proclaim in the national press, that she "would be injecting" a cure for autism. Just like that. It strikes me as terrifying that such researchers exist, who do not at all pay attention to what harm they are doing to the very people -- the autistic adults and children -- who hear from such espoused autism "experts" that they feel autism is something terrible that needs to be cured. Just like that. It angers me to think of the lack of consideration they pay to the likes of my son Adam, who will be utterly offended and effected by such "expert" views of him. Indeed the laziness of society to accept such "expert" advice on autism also frightens me. If we believe all of those epidemic statistics that are currently espoused by our so-called "respected" autism organizations, we will all be autistic in about twenty years time. I can assure you, I will never take my son to the likes of such "experts," who espouse so-called "facts" about autism -- either disproved or out-dated. We know we do not have an epidemic on our hands, as refuted by the science, and it's time we stop saying so for the purposes of raising money.

I will invest in understanding autism.

I sat back the past several days, and considered the effects of all this on Adam. I would now like to quote a response I typically get from parents, which was written in the letters to the editor in the National Post today: "With all due respect for Ms. Klar-Wolfond, her son is only four years old. It is presumptuous for her to think that she can speak on behalf of of parents of children with autism before she has watched her son endure the ravages of puberty and the challenges as he becomes more self aware."

Perhaps it was this comment that struck me as I take a view to Adam's future.

It seems odd that such parents believe, in their whole hearts, that autism is attacking our children, like cancer, and needs to be eradicated. And yet, the science proves that there is no epidemic; that autism has existed for generations; that there has been no increase in autism; and by all accounts from science and autistic people, autism IS a different species of human, as noted in the recent words of Dr. Laurent Mottron, and appreciated by Leo Kanner as far back as 1943. If there is anything that could ravage my son Adam, of which I am most fearful, it is this attitude that he is somehow diseased, insufficient, not normal or incomplete. I, like many parents, work to achieve every possibility for my son. Adam, works very hard to reciprocate, to become part of this world that judges him so harshly. That, above all else, is heartbreaking. To witness such an affectionate, charming child, otherwise viewed by society has less than human, in fact, "not human at all..." that is the tragedy.

If there is anything I feel I need to do more than ever,is protect Adam and to endow him with the confidence to stand up against all of these pejorative comments about him as an autistic person. I am baffled at how parents find it justifiable to comment on every negative, or challenging trait of their child, without at all doing the work and research into understanding what autism is. One day, when their child becomes more "aware" of themselves, they will understand their parent's disappointing view of them. I know Adam, at four, is already aware that he is different and this speaks to me as a crisis to contend with -- not a crisis of autism, but a crisis of inaccurate stereotyping of autistic people. Not a crisis of an autism epidemic, but a crisis of prejudice and lack of understanding. Indeed, an epidemic of laziness and sanctioned discrimination. Autistic children and adults are suffering, but as they say, not from their autism, but from society and parents who do not accept them and spotlight EVERY challenge, EVERY negative as the sole purpose to get rid of autism. I am always struck by the dignity and grace with which autistic people continuously handle such attitudes and perjorative language, and I choose to stand with them -- because my son Adam is one of "them."

Our society is full of inaccurate science to which parents pay no attention. Society shoves the evidence aside because in autism, it doesn't matter. Instead, inaccurate information is espousesd by our leading autism organizations who say that autism is a crisis, an epidemic and our children are a "tragedy" and will be a "burden on society." They choose to ignore the science that states overwhelmingly that we neither have an autism epidemic on our hands or that "ABA IS THE ONLY LIFE-SAVING WAY TO CURE AUTISM." We now know from every control and random study, that ABA does not help the child to become independent adults BECAUSE of it. In fact, ABA may have done a great deal of damage. We know that so-called early intervention candidates as young as two had to be removed from these so-called "effective" therapies. Ivar Lovaas himself said "ABA is not a cure for autism ...it is only an educational method." So let's not then overstate things. If you want to extract methodologies, recognize them as such. Do not hyperbolize a therapy as a life-saving cure. Further, understand the formerly aversive nature of ABA. I see changes in the therapists today, recognizing and extracting from many different methodologies that help autistic children. But do not state that it is "evidence-based." We are, still at this point since we do not fully understand autism, extrapolating.

Here is a parent who actually reveals the so-called "effectiveness" of ABA:

"Because of that, he was able to get started early in his life on an effective behavioural treatment therapy, called Applied Behavioural Analysis. He has been benefiting greatly from it ever since....

I see no joy in watching my child repeatedly bash his fist to his face or in cleaning up feces-smeared carpets and walls at 3 a.m. My wife and I will continue to do everything in our power to stop autism from ravaging our lives and, more importantly, the life of our much-loved son, Michael."


With all due respect to their child, I do not equate the benefits of ABA in this statement. We know that autism is forever. It is not life-threatening like cancer. ABA will not eradicate autism. Various methods to teach autistic children, if taught with respect and understand of autism itself, can help the autistic person be the "best" autistic person they can be.

The fact is, ABA is not a proven therapy for autism, despite what parents say and it's time people stop ravaging our children for the sake of trying to prove it. Further, the science just does not support it. Yet, we continue to espouse it as absolute -- in government fact sheets, among autism organizations. As Dawson says, "Don't autistic children deserve better than assumption and speculation?" The least we can do is invest in understanding autism, and respect our children.

All children need to be understood and accepted by their parents, not constantly reminded what a disappointment they are, and how much grief and financial burden they have caused their parents. All children deserve to be respected and provided every opportunity in life, and be regarded as whole people instead of broken ones.

While I do not want to alienate parents (even though some continue to alienate the autistic in these discussion about them), I do mean to suggest that it is obvious some have spent more time mourning over the "ravages" of autism rather than meeting the hundreds of autistic adults living in the Province of Ontario, and learning from them. There is more time spent grieving over the child who is alive and who needs us as parents to believe in them. I believe that if we can build that bridge by providing more forums for autistic people to speak, to participate on our scientific research teams, to teach in our schools, to sit on the boards of autism organizations, we will better understand the enormous challenges as well as the fundamental value of autistic people in our society. Parents also need to be supported in understanding the many aspects of autism. No one is denying that autism can be a challenge, that perhaps some autistic people who can't speak, may wish to, for instance. I am also baffled that parents do not find intrinsic joy in their children, no matter what the disability.

Autistic people have much to teach us. My son has taught me so much already, even, at four. He has guided me to many autistic people in North America who have taught me more about autism than any non-autisitc "expert." But I guess if you feel that autistic people don't even understand themselves, you might continue to alienate autistics from the very discussions concerning them. This does not happen in any other disabled community today. Yet, it's sanctioned in autism.

It bewilders me that parents do not share the same goal for their children whom they love. It strikes me as odd that they do not want them, really, to be the best people they can be, but instead, have committed to hopelessness, placing all of their time on ineffable cures. It seems to me, that our children need all of our strength and commitment AS PARENTS to BELIEVE in them. But you won't believe this if you constantly believe that your child has a disease like cancer. And we do KNOW from the science, that no external cause has been identified with autism to suggest that it is like cancer. Overwhelmingly, autistics say that despite their many challenges, they still would not cure their autism. This sounds familiar, as the blind describe their blindness as a way of being. Something that becomes part of them. Do we define blind people as diseased? No. We define them as handicapped in a world where the majority SEES. Yet, we know that the blind have many abilities and strengths without sight as a result of the brain's ability to adapt.

Instead, these are the questions I ask myself with every action I take as we grow with autism:

Doesn't Adam deserve to be understood?
Doesn't he deserve to be treated with respect?
Doesn't he deserve to be protected against pejorative comments that destroy personhood?
Doesn't he deserve to be regarded as a whole person instead of an impaired one?
Doesn't he deserve to be included in discussion about him as an autistic person?
Doesn't he deserve the right to a good education?
Doesn't he deserve the right to be accomodated with services that is proven by peer-reviewed science?
Doesn't he deserve the same quality of life that we all have?
Doesn't he deserve to be respected by me, as his parent; to treat him as a delightful and equally entitled individual?
Doesn't he deserve the right to be legally protected against discrimination on every level of science, education, employment, accomodation and services?

I think he does. It doesn't mean denying autism. It does not mean that I am in denial. It means that I accept autism. I accept the challenges, and indeed we all have our own, as families, as individuals. I respect the challenges that all parent's cite. They are real. They should be supported, but not at the exclusion of autistic people and inaccurate facts. Also, we must all acknowledge that opinions may differ. One person's tragedy is another person's challenge. We can meet life head-on, viewing the cup half-full, or choose to live with it half-empty.

Yet, I strongly disagree with regarding autistic people as incapable of understanding themselves, and at the exclusion of an autistic person's right to accurate science, and with the complete and utter disregard for how words effect them. We must consider autistic people as whole people, with the right to speak for themselves and participate in these discussions.

Acceptance also means I disagree with spotlighting the challenges of our children for the sole purpose of being right in the face of incorrect facts about autism that are glaring today. This is why I will not discuss many things about Adam -- and many people make a lot of assumptions about him and our family. It's a weak argument -- whose better or worse off, who is higher and lower functioning, whose child is most self-injurous, who has more money to "treat" autism. These arguments achieve nothing, reveal nothing. I've met many parents with little who do not complain as much, who face the same struggles, and who have come up with creative, accepting environments for their children. And you know what? It's still all autism.

The strategy of creating a disease model in autism is not even working. On the one hand, while we broaden our knowledge about autism, we are also increasing fear, and this is resulting in the exclusion of autistic children in many of our schools. We need more services and education -- not to remediate autism, but to teach the autistic person in a way that befits them. We need to respect and accomodate autistic people as much as we accomodate the blind with Braille.

Above all, we need as parents, professionals, society and autistic people, to find a common language, perhaps only forced upon us by the evidence, to support parents and accomodate the autistic members of our society. I believe we can do it.

With all my heart and soul, I believe in Adam, and his basic human entitlements. I believe that by the time he reaches puberty, he needs to know that he is loved and accepted by me, his mother. He has taught me all of these lessons. All thanks to his world, his wonder and his innocence.

4 Comments:

Blogger abfh said...

Fabulous post -- I'm clapping and cheering and giving you a virtual standing ovation!

I just blogged about what really ravages autistic teens -- and it's a human rights crisis, indeed.

3:22 PM  
Blogger Alyric said...

This is one hell of a post. Thank you.

I was struck with the parents identifying and concentrating on the 'challenges', 'problems'etc and what I've seen in practice is the ubiquitous double standard. No way do some people use the same yardstick for autistics that they would use for themselves or their other children. If the child does something that can be construed as malicious, it will be even when other children do what is basically the same, though the autistic version probably looks different. For the latter the rationalisation for the negativity is something along the lines of 'at that age, X wasn't doing that', thereby neatly taking refuge in complete ignorance of all thing autistic that one thought they had digested. Apparently not.

The awful thing is that the child is undermined on practically all occasions and when the adult dimly recognises that they actually have stepped way beyond the boundaries of reasonableness, they then resort to praising the child when they have done nothing that really warrants it, thereby destroying any chance the child has to develop mature judgement.

I'm really referring to a child with Aspergers, but I think this is a spectrum wide issue.

10:47 PM  
Blogger Kathy said...

Hi Estee,

As I read more and more of your your ideas and views it is amazing how much we think on the same line even though our boys are 16 years apart. Don't listen to people saying "It's easy to think like you do, Adam is only 5" - if you can't see the light in your son's eyes now, you won't see it later, so just keep looking at him as a person, it will help his self esteem in the future.

I just give you one little story:

I have two more kids, a set of twins, they are 12. When they were about 8 and I was driving the car pool w. Danny in the car, one of the boy asked my kids "how come you brother speaks so funny?" you know what my daughter answered? "he might speaks funny, but he speaks in 4 languages!" That's how they are growing up, looking up at their brother for all his gifts, not looking down at him for his difficulties.

Kathy

7:12 AM  
Anonymous Jess said...

Just curious if you have heard of RDI and if you have any thoughts/ideas about it? I found it interesting how it's based on forming new pathways in the brain.

1:41 AM  

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